Supporting husband

Hi I had same diagnosis I found little and often to start with the thought of a full 3 meals a day freaked me out. I found 6 small plates spread through the days helped. I took the mantra food is fuel and eat to live not live to eat there will be good day plus bad days some days 2 steps forward and - step back . My blog below might help. I aimed for 2500 calories each and every day You can get decent calorie  smoothies adding nut butters protein powders etc. I supplemented by adding ensures inti the mix. One day at a time  he will get there. Make sure te drinks enough as well 

Hazel 

this might help 

www.yumpu.com/.../cookbook-by-andrew-gaylor-head-and-neck-cancer-survivor-2022

Thank you Hazel.  I have read your blog and found it very helpful.  

Hi. It’s difficult as a carer to not nag. I think all you can do is to say you’ve been on here where it’s made clear that all this is normal. Maybe even encourage him to look himself. As hazel points out food is fuel at the moment. I made myself eat. If I could get it down I did. To be honest I could have not eaten for  six months. But I knew I had to make a recovery and I did, a good one. I wasn’t happy with my taste for a year. 

Hi, I am currently going through recovery after my 2nd surgery for local recurrence of ACC. I too have been having issues with lack of appetite and even an aversion to food. I have lost some weight, but i have found that the Ensure Compact drinks which are only 125ml but are 300 calories are "doable". Also Asda do a high calorie Yogurt that is also almost 300 calories.I have had a Free Fibular Flap Mandibularectomy, so I am restricted to soft food only. I do struggle, but the Ensure Compacts are so small that I can manage them and they help me get enough calories in. Good luck.

Things have been pretty good since my husband finished treatment at the end of March.  His eating, taste and dry mouth have improved and he is back to his old self in most respects.  However, his 3month scan showed 2 spots on one  of his lungs and the follow up scan 3 months later show they have grown slightly and that there are a few more even smaller ones, so he has been referred to the oncologist again.  We got a terrible shock when he told us that he can't cure it and that he might only have 2 years with treatment.  To say I am devastated is an understatement.  We had only just started to enjoy his retirement when he was first diagnosed, and now it looks like we haven't got much time left. Sorry to be a downer, but I just want to scream and shout.  I have managed to stay so positive throughout his awful treatment but .now I feel that all my hope has gone.

So very sorry to hear your husband's bad news, especially after all you both came through already. Prayers and thoughts with you both, Tina x

suc56 said:

I have managed to stay so positive throughout his awful treatment but .now I feel that all my hope has gone.

I’m so sorry to hear that. There is hope in the form of immunotherapy and there are trials in progress combining immunotherapy with cancer vaccines and peptides. Please ask the oncologist for up to date info. Your husband might be eligible. There have been some good responses to immunotherapy 

I have a contact who has been on Nivolumab for five years. 

So sorry to hear your sad news. As others have said immunotherapy has been having good  results recently. Ask your oncologist to investigate what trials are on offer at the minute as well. 
Hazel xx

So sorry to hear this news. I hope you find a treatment option that helps you. Thinking of you.

I am so sorry - that is so hard, after all you've been through together. It's what we all fear. Treatments are advancing all the time though. I hope you and your husband can make the most of now and come to terms with whatever the future holds. Sending love and luck

Catriona